Mesenteric Panniculitis or Sclerosing Mesenteritis

Hello, I've been recently diagnosed with MP a few months ago. A CT scan uncovered the issue while looking for diverticulitis (which was negative). The CT guys thought I should do a colonoscopy to get a full image of the area. Which I did, and all is good. The GI doc says that if I can manage the MP pain that not treating it is fine. He also added that I should wait to see if I encounter severe pain before considering Prednisone because of the side effects.

I'm just wondering - how severe is the pain this community is experiencing? For me, it's more "uncomfortable" than "crippling". I mean, it never has stopped me from going to work, or woken me up from sleeping. It's more annoying than anything...but I'm curious if anyone else has the same kind of issue? Also, is there any over the counter drugs that might be effective (ibuprofen?).

I'm male, 46.

Thanks,
Mike

Welcome to Connect @miker46! Allow me to introduce you to a few other members who may be able to share their experience. Please meet @bertbiz, @billindc, @mardellepoff and @billymac65. Do any of you know of any over-the-counter medication to alleviate MP pain?

Hi Mike,
I was diagnosed with MP in May of this year. I had a lot of pain leading up to the diagnosis. I had a CT Scan and once diagnosed, the doctor put me on 40 mg of Prednisone for a few weeks, then started to taper me off which took until early August. The high dose of Prednisone made me feel "speedy." I didn't sleep well, but the pain went away. I didn't have any pain until I was tapered off to about 15 mg. a day. I was put on a low-fiber diet (white rice, white flour, no veggies, etc.) Then the pain was mild, nothing crippling. I had a second CT Scan and the doctor told me the MP was "resolving." So that news was good. The doctor also told me to think of MP (at this milder stage) like it's IBS. We will be managing flare-ups if they happen. I was put on the FODMAP diet. On that diet you are encouraged to incorporate certain vegetables back in your diet, but slowly and only one kind of vegetable at a time so that you can figure out which ones work for you and which ones don't. It's a lot of trial and error, but worth it. I've noticed one "sore spot" in my abdomen and have to be careful not to roll over in my sleep and set it off. I also have to be careful my cats don't walk on the spot. I may be hyper aware of my pain levels at this point. Some days are much better than others, but it is manageable. At the beginning I drank a lot of banana smoothies made with Kefir and Cinnamon. That was very soothing. So if I'm feeling like I'm having a flare up, I eat soft foods, like eggs and tofu with rice. http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ As for pain, I've been taking over-the-counter acetaminophen (Tylenol). I have been banned from taken any Ibuprofen ever again, as that may have contributed to this condition. What other contributing factor for me are family genetics. My father had Crohn's Disease and my mother had Non-Hodgkins Lymphoma.

I will be going to the GI Doctor next week to view my CT Scans side-by-side. I am going to talk to her about the mild pain I am experiencing and find out what else can be done, if anything.

I hope this has been helpful to you.

Take Care,
Roberta
@bertbiz

I was diagnosed with mesentery panniculitis in 2010. went thru er caner center removed 3 masses no cancer. took my spleen didn't record it. why. so 2016 now same pain in back side stomach issues somewhat. mri after car accident showed diverticulosis. Moffit has been monitoring me but now this pain I have no life now. disability. I thought it was mostly my back but know I don't know. think I'm at or entering stage three. hope cancer center will treat me. pcp not so good. on predisone. this is from my moms family. I have worked in health care a lot. EVERYONE SHOULD LOOK INTO IF CELIAC DESEASE IS IN THEIR FAMILY OR IF THEY HAVE IT. THIS CAN BE A SECONDARY CONDITION TO IT. I know in my family its almost all of them on moms side from Scotland. I will be praying for all of you this is no life. God can get us thru.

Acually I was on a fresh food diet for a year felt great lost 40 pounds was running lakes. then I went back to drinking cola and bad food again when my life changed. I think it was a big contributor to this back side stomach pain.

this is a secondary condition to a primary most often. Lymphoma is one but I just read it is stage three. You have that baby God will provide and help.

Hi @snoopdog! Let me be the first to welcome you to Connect, where I think you’ll find a lot of relevant information and support here as we have a lot of members who are living with MP, diverticulitis and celiac as well. You might also be interested in the discussion on diverticulitis here http://mayocl.in/2cpRbiw

Snoopdog, help us understand your current diagnosis. You said you have mesentery panniculitis and diverticulitis. Do you also have lymphoma?

Thank you, Roberta. This information is very insightful. Other than feeling "speedy" did you experience any other side effects? (ie the dreaded, "moon face").

I'll try figuring out what my triggers are with respect to my diet..and try the soft foods on flare up approach.

Thanks again for your time,
Good to hear things are better! 🙂

Hi miker46, I did not get the dreaded moon face. On the good side effect front, nothing, I mean nothing hurt! Not my back, my hip, my neck. All the things that are always sore. The speediness was the biggest side effect. When I was tapering off I noticed my hair falling out. I researched it and it seems to be common, and it does grow back. I started taking Biotin. The hair loss seems to be lessening. I am lucky to have really thick hair. No one would say, "OMG, you're losing your hair!" But I can tell the difference.

I'm so glad you found my post helpful. All this experience should count for something, right?

Roberta

i am in the same place exactly. being monitored by mofit cancer center. but in the mean time I doubled over again with back and side pain. trying to do physical therapy with this is next to impossible to get results from a back injury.